Defining Death: Getting It Wrong for All the Right Reasons

Transcription

1 Defining Death: Getting It Wrong for All the Right Reasons Robert D. Truog * The Uniform Determination of Death Act defines death as either the irreversible cessation of all circulatory and respiratory functions or of all functions of the entire brain. As a matter of scientific fact, many patients declared dead for purposes of organ donation do not meet this legal requirement. In addition, many of these patients have not lost the integrated functioning of the organism as a whole, a scientific standard that defines life across the entire biological spectrum, not just in humans. As such, current practices violate the implicit ethical and legal principle known as the dead donor rule, which states that vital organs may never be removed from patients before they are dead. I claim that while current practices of organ procurement do cause the death of the patient, they are nevertheless ethical because: (1) they are performed with the patient s or surrogates consent (principle of respect for autonomy), and (2) they do not harm or set back the interests of the patient (principle of nonmaleficence). While the ideal long-term solution is to reframe the ethics of vital-organ donation in terms of these principles rather than the dead donor rule, a more practical short-term solution may be to conceptualize current approaches to defining death as socially acceptable legal fictions, acknowledging that they are not biologically valid. Not only would this solution create a more honest and transparent public policy, but it would save lives by increasing both the quantity and the quality of organs available for transplantation. Introduction The dead donor rule (DDR) is a principle that has been an implicit ethical and legal requirement in the procurement of organs since the beginning of the transplantation enterprise in the 1960s. 1 The rule has been expressed in various formulations, including: (1) vital organs for transplantation may only be procured from patients who are dead, or (2) physicians * MD Frances Glessner Lee Professor of Medical Ethics, Anaesthesia & Pediatrics Director, Center for Bioethics, Harvard Medical School Executive Director, Institute for Professionalism & Ethical Practice Senior Associate in Critical Care Medicine, Boston Children s Hospital. 1. See ROBERT M. VEATCH & LAINEY F. ROSS, TRANSPLANTATION ETHICS 45 (2015) (mentioning that public-policy debates regarding transplantation and the definition of death began in the 1960s after the first successful transplant); John A. Robertson, The Dead Donor Rule, HASTINGS CENTER REP., Nov. Dec. 1999, at 6, 6 (identifying the dead donor rule the ethical and legal rule that requires that donors not be killed in order to obtain their organs as one of the factors preventing cadaveric organ donations from being sufficient to meet the needs of persons with end-stage organ disease).

2 1886 Texas Law Review [Vol. 93:1885 may not cause death when procuring vital organs for transplantation. 2 The rule does not exist literally in the law, but rather is understood to be an implication of existing laws and ethical standards related to homicide. 3 This Article is divided into three Parts. Part I gives a historical and conceptual background to organ donation. Part II advances an argument that is purely scientific in nature and relies only on careful examination of the biological facts about patients currently diagnosed as dead for purposes of organ donation. I will conclude that many patients currently deemed to be legally dead for purposes of organ donation are not in fact dead by any scientific or biological standard. If this claim is correct, then it follows that our current practices of organ procurement do not conform with the DDR. While the majority of experts and commentators on the subject argue that we should not abandon the DDR, it is important to be clear that unless this claim can be shown to be false, there is no way that we can continue our current practices in organ procurement and continue to hold allegiance to the DDR. Again, I want to emphasize that this argument does not depend upon any ethical or value assumptions, but rather is a narrow scientific argument that the biological claims made by others over the years cannot withstand critical scrutiny. In Part III, I explore the options that are available to us, if indeed the claim made in Part II is correct. One option, of course, would be to confirm the authority of the DDR and to stop procuring organs from individuals that we have previously considered to be deceased. This option would have tragic consequences, resulting in the premature death of thousands of patients each year from failure to receive a life-saving organ, as well as failure to honor the altruistic requests of many individuals to donate their organs to others when they are no longer in need of them. A second option, which I will argue is the best long-term solution, is to reconsider the ethical and legal foundations of organ procurement and explore whether it may be ethically and legally permissible for patients to donate vital organs before they are dead, provided certain other requirements are met. For example, I propose that individuals who will not be harmed by organ procurement and who have given permission for this procedure should be permitted to donate, even if at the time of organ procurement they are not yet dead. In addition to other implications that will be explored, this approach would legitimate our current approach to organ procurement. A third option, which may be the best short-term solution, is to acknowledge the discordance between our scientific understanding of death 2. See Robertson, supra note 1, at 6 (describing the DDR s mandate that organ retrieval itself cannot cause death ). 3. See id. (noting the relationship between the DDR and the laws and norms against homicide).

3 2015] Defining Death 1887 and our current legal requirements for the diagnosis of death. This approach would frame our current criteria for determining death as a legal fiction and would also legitimate our current practices, while recognizing that the legal requirements for determining death do not necessarily conform with scientific reality. Finally, we have the option of simply ignoring the problem and choosing to muddle through. At the present time, this would seem to be the preferred choice of the medical profession and perhaps of society in general. While it has the obvious advantage of allowing a life-saving practice to continue, it has a number of practical and ethical drawbacks as well, which will be explored. I. Historical and Conceptual Background The modern age of organ procurement and transplantation from deceased donors can be traced to December 3, 1967, when Christiaan Barnard performed the first heart transplant in Cape Town, South Africa. 4 Almost lost in the headlines about this remarkable medical advance was the question of whether the donor was dead at the time his heart was removed for transplantation. The relevance of this question was not lost upon Henry Beecher, an anesthesiologist at Harvard Medical School, who saw it as a key issue to be resolved if organ transplantation was to continue to develop. 5 He immediately sought the support of the Dean to appoint an Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, which he chaired. 6 The paper from the Committee, titled A Definition of Irreversible Coma, suggested that the diagnosis of irreversible coma could perhaps be considered a new way of defining death. 7 If so, then procuring organs from patients with devastating brain injury, such as the donor in Cape Town, could be seen as being in compliance with the DDR C.N. Barnard, The Operation: A Human Cardiac Transplant: An Interim Report of a Successful Operation Performed at Groote Schuur Hospital, Cape Town, 41 S. AFR. MED. J. 1271, 1271 (1967). See also Christiaan Barnard, Reflections on the First Heart Transplant, 72 S. AFR. MED. J. xix, xix (1987) [hereinafter Barnard, Reflections] (describing the medical advances and steps that led Dr. Barnard to perform the first heart transplant). 5. See Ad Hoc Comm. of the Harvard Med. Sch. to Examine the Definition of Brain Death, A Definition of Irreversible Coma, 205 JAMA 337, 337 (1968) [hereinafter A Definition] (examining the criteria for irreversible coma in part because obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation ). 6. Id. See also WILLIAM H. COLBY, UNPLUGGED: RECLAIMING OUR RIGHT TO DIE IN AMERICA 74 (2006) (recounting the Dean s involvement in the formation of the Harvard Brain Death Committee and the subsequent report). 7. A Definition, supra note 5, at See Barnard, Reflections, supra note 4, at xix xx (relating that the donor for the first heart transplant was selected after she was certified to be brain-dead, but while she was still connected to a ventilator).

4 1888 Texas Law Review [Vol. 93:1885 Unfortunately, Beecher and his colleagues did not actually provide any scientific, philosophical, or logical justification for why the state of irreversible coma could be equated with death. 9 Indeed,, in my opinion, such a justification does not exist. Despite these ambiguities, in 1970 Kansas became the first state to adopt the Harvard criteria into law as a definition of death.. 10 Several other states followed in the next few years, creating the awkward situation where it was possible for a patient to be alive in one state and deadd in another. 111 In 1980, the National Conference of Commissioners on Uniform State Laws approved the Uniform Determination of Death Act (UDDA), which has since been adopted by legislation or case law in all fifty states. 12 The UDDA states: An individual who has sustained eitherr (1) irreversible cessation of circulatory and respiratory functions, orr (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be madee in accordance with accepted medical standards. 13 Figure 1: Two Pathways to Organ Donation 9. Seee A Definition, supra note 5, at (lacking anyy substantive discussion of the reasons for why irreversible coma should qualify as death). 10. PRESIDENT S COMM N FOR THE STUDY OF ETHICALL PROBLEMS IN MED. & BIOMEDICAL & BEHAVIORAL RESEARCH, DEFINING DEATH: D A REPORT ON THE MEDICAL, LEGAL AND ETHICAL ISSUES I IN THE DETERMINATION OF DEATH 62 (1981). 11. Id. at UNIF. DETERMINATION OF DEATH ACT A (1980). See e also RAY D. MADOFF, IMMORTALITY AND THE LAW: THE RISING POWER OF THE AMERICAN DEAD 37 (2010) (noting that forty-three seven have adopted similar statutes or case law). 13. UNIF. DETERMINATION OF DEATH ACT A 1 states have adopted the Uniform Definition of Death Act,, while the otherr (1980).

5 2015] Defining Death 1889 In other words, the UDDA specifies two different ways for determining death. These correspond with the two main pathways for organ procurement currently in use (Figure 1). 14 Both are predicated upon the DDR, i.e., each pathway corresponds to one of the alternative ways for determining death. In the Brain Death Pathway, death is determined on the basis of the irreversible loss of all brain function, whereas in the Donation after Circulatory Death (DCD) pathway, death is determined on the basis of the irreversible loss of circulatory function. 15 In patients diagnosed as brain-dead, the organs are perfused with oxygenated blood from the heart right up until the time when they are infused with cold preservative fluid. 16 This pathway, therefore, yields organs in the best possible condition, since they suffer minimal ischemic injury from lack of blood flow or oxygenation. 17 In this pathway, organs of all types can be procured, including the heart, lungs, liver, kidneys, pancreas, bowel, and more. 18 The DCD protocol, on the other hand, requires the surgical team to wait two to ten minutes (depending on the hospital protocol) after the patient loses a pulse (to be sure that the loss of pulse is irreversible ) before organ procurement can begin. 19 This exposes the organs to some degree of ischemic injury, and as a practical matter, only kidneys can typically be procured in this way. 20 In addition, these kidneys are at some greater risk of failure compared with kidneys obtained from brain-dead donors D. W. McKeown et al., Management of the Heartbeating Brain-Dead Organ Donor, 108 BRIT. J. ANAESTHESIA (SUPPLEMENT 1) i96, i96 (2012). 15. See A. R. Manara et al., Donation After Circulatory Death, 108 BRIT. J. ANAESTHESIA (SUPPLEMENT 1) i108, i108 (2012) (noting that DCD uses circulatory criteria for determining death whereas donation after brain death uses neurological criteria for determining death). 16. Dick Teresi, The Beating Heart Donors, DISCOVER, May 2012, at 36, 40 (explaining that beating-heart cadavers are preferable for organ harvesting due to continual circulation of oxygen to the organs up to the point of removal). 17. Id. 18. Paul G Murphy, Optimizing Donor Potential in the UK, 6 CLINICAL ETHICS 127, 127 (2011) ( The [after-brain-death] donor can offer heart, lung, liver, kidney, small bowel and pancreas for transplantation, and is viewed as the favoured donor by retrieval and transplantation teams. ). 19. Srikanth Reddy et al., Liver Transplantation from Non Heart-Beating Donors: Current Status and Future Prospects, 10 LIVER TRANSPLANTATION 1223, 1225 (2004). 20. See id. at (describing the problems associated with prolonged warm ischemia in non-heart-beating donors but stating that there is considerably more clinical experience with kidney transplantation in these donors). 21. See COMM. ON NON-HEART-BEATING TRANSPLANTATION II, INST. OF MED., NON- HEART-BEATING ORGAN TRANSPLANTATION 8 (2000) [hereinafter NON-HEART-BEATING ORGAN TRANSPLANTATION] (asserting that brain-dead donors have all but replaced DCD donors because of improved outcomes ).

6 1890 Texas Law Review [Vol. 93:1885 II. Are Brain-Dead or DCD Donors Known to Be Dead at the Time Their Organs Are Procured? A. Brain-Dead Donors The UDDA requires that [a] determination of death must be made in accordance with accepted medical standards. 22 Less than a year after the UDDA was adopted, an article was published in the Journal of the American Medical Association (JAMA) describing the testing that constituted accepted medical standards for determining brain death. 23 Although these standards have evolved over the years, the core elements have not changed. 24 In most cases, the testing can be done at the bedside by physical exam and with only limited specialized equipment. 25 The law requires that the patient has the irreversible loss of all functions of the entire brain, including the brain stem. 26 To fulfill the requirements, the examining physician first performs investigations to show that the loss of function is irreversible, i.e., that there is a plausible explanation for what caused the injury and that various reversible conditions have been ruled out, such as a drug overdose. 27 The physician next shows the patient is unconscious by testing to see if the patient responds to verbal commands or painful stimuli. 28 Function of the brain stem is tested by examining several brain-stem reflexes, including whether the pupils react to light and whether the patient coughs or gags with stimulation to the back of the throat. 29 Finally, a key element of the testing, known as the apnea test, examines whether the patient makes any effort to breathe when the ventilator is turned off and carbon dioxide is allowed to build up in the patient s blood UNIF. DETERMINATION OF DEATH ACT 1 (1980). 23. Med. Consultants on the Diagnosis of Death to the President s Comm. for the Study of Ethical Problems in Med. & Biomedical & Behavioral Research, Guidelines for the Determination of Death, 246 JAMA 2184, (1981). 24. See Eelco F.M. Wijdicks, The Diagnosis of Brain Death, 344 NEW ENG. J. MED. 1215, (2001) (explaining the steps of a clinical examination to determine brain death). 25. See id. at 1215 (contending that determination of brain death must be based on, inter alia, neuroimaging... [and] confirmatory laboratory tests ); Eelco F.M. Wijdicks et al., Evidence- Based Guideline Update: Determining Brain Death in Adults, 74 NEUROLOGY 1911, (2010) [hereinafter Wijdicks, Evidence-Based Guideline Update] (detailing a brain-deathevaluation protocol). 26. UNIF. DETERMINATION OF DEATH ACT 1 (1980). 27. Wijdicks, Evidence-Based Guideline Update, supra note 25, at Id. at Id. 30. Id. at

7 2015] Defining Death 1891 In the years following publication of the UDDA and the guidelines in the JAMA, the medical community became aware that there were significant discrepancies between what the law required and what the diagnostic testing demonstrated. 31 In short, it became clear that the diagnostic testing examined only a few select functions of the brain and that many patients diagnosed as brain-dead actually retained functions that were not a part of the diagnostic battery. For example, many such patients continue to maintain temperature regulation, clearly an important brain function. 32 Others continue to control fluid and salt homeostasis through the regulated secretion of hypothalamic hormones. 33 More controversially, some patients continue to have brain-wave activity, although it is not clear whether this activity actually represents brain function. 34 And finally, many patients show an increase in heart rate and blood pressure at the time of skin incision for organ procurement, although whether this represents the perception of pain or merely reflex activity at the level of the spinal cord is not clear. 35 In any case, there is agreement in the medical profession, then and now, that the current clinical criteria for the diagnosis of brain death do not meet the letter of the law. 36 Professor James Bernat, a distinguished neurologist at Dartmouth College, was one of the first to recognize this discrepancy between the law and the clinical diagnostic criteria. 37 In the same year that the UDDA and the JAMA article were published, Bernat and colleagues wrote a seminal paper that they hoped would resolve the discrepancies between the requirements of the law and the clinical findings as well as provide reassurance that brain death is really death. 38 The paper, titled On the Definition and Criteria of Death, built upon a scientific tradition going back 31. See Amir Halevy & Baruch Brody, Brain Death: Reconciling Definitions, Criteria, and Tests, 119 ANNALS INTERNAL MED. 519, (1993) (discussing the tension between the legal criterion and the standard clinical tests); Robert D. Truog, Is It Time to Abandon Brain Death?, HASTINGS CENTER REP., Jan. Feb. 1997, at 29, 29 [hereinafter Truog, Is It Time to Abandon Brain Death?] ( [T]here is evidence that many individuals who fulfill all of the tests for brain death do not have the permanent cessation of functioning of the entire brain. (internal quotation marks omitted)); Robert D. Truog, Brain Death Too Flawed to Endure, Too Ingrained to Abandon, 35 J.L. MED. & ETHICS 273, (2007) [hereinafter Truog, Brain Death] (critiquing the existing brain death standard). 32. Truog, Is It Time to Abandon Brain Death?, supra note 31, at Id. at Id. at Id. 36. See sources cited supra note James L. Bernat et al., On the Definition and Criterion of Death, 94 ANNALS INTERNAL MED. 389, 389 (1981). 38. Id. at 394.

8 1892 Texas Law Review [Vol. 93:1885 to the 1700s about the conceptual distinction between life and death. 39 They wrote, We define death as the permanent cessation of functioning of the organism as a whole. 40 Building upon the work of renowned physicians and physiologists, from Claude Bernard in France in the 1860s through Walter Cannon at Harvard in the 1920s (who coined the term homeostasis), 41 they elaborated upon the theme that life and death can be understood in terms of thermodynamic concepts. 42 In other words, living organisms are distinguished from the inanimate world by their use of energy-consuming processes to oppose entropic forces and maintain internal homeostasis. Throughout life, living organisms use nutrients to generate the energy required to maintain the complex organization and myriad molecular and cellular interactions that constitute life. Once these energy-consuming processes stop, we return to the dust of the inanimate world. This scientific definition of life can be applied across the entire biological spectrum, from single-celled organisms like amoebas, to plants like trees and flowers, and to animals like insects and human beings. 43 While dying is a process, there is a moment when a point of no return is crossed and where no resuscitative efforts can be effective at restoring the organism to a state of homeostasis. 44 This is the moment of death. In any given case, it may be difficult to know when this moment occurs. For example, people who drown in freezing-cold water can sometimes be resuscitated several hours after they have stopped breathing. 45 Under normal circumstances, however, it seems to be very rare that patients can be resuscitated after more than ten to fifteen minutes of pulselessness. 46 Hence, while the moment of death is metaphysically precise, determining this moment may be epistemologically difficult. In their paper, Bernat and colleagues use this framework to explain why brain death is really the death of the organism: The criterion for cessation of functioning of the organism as a whole is permanent loss of functioning of the entire brain.... [This is] because the brain is necessary 39. See David J Powner et al., Medical Diagnosis of Death in Adults: Historical Contributions to Current Controversies, 348 LANCET 1219, 1219 (1996) (reviewing the history of medical conceptions of death from the eighteenth century to modern day). 40. Bernat et al., supra note 37, at Steven J. Cooper, From Claude Bernard to Walter Cannon. Emergence of the Concept of Homeostasis, 51 APPETITE 419, 420 (2008). 42. Bernat et al., supra note 37, at Id. at See Leon R. Kass, Death as an Event: A Commentary on Robert Morison, 173 SCIENCE 698, (1971) (arguing for an understanding of death as an event rather than a process). 45. Mark Harries, ABC of Resuscitation Near Drowning, 327 BMJ 1336, 1336 (2003). 46. See Greg Johnson, Reviving the Dead, PENN CURRENT, Jan. 20, 2011, archived at (describing the small window for resuscitation and suggesting that resuscitation at fifteen minutes of pulselessness is uncommon).

9 2015] Defining Death 1893 for the functioning of the organism as a whole. 47 The idea here, in other words, is that the brain functions as a central command center for the body, such that when the body loses the controlling influence of the brain, the body simply disintegrates. 48 As the authors explain, [d]estruction of the brain produces apnea and generalized vasodilatation; in all cases, despite the most aggressive support, the adult heart stops within 1 week, and that of the child within 2 weeks. 49 When this paper was written in 1981, Bernat s analysis was almost certainly correct. At that time, patients diagnosed as brain-dead rapidly progressed to cardiac arrest despite the best efforts of clinicians to keep them alive. The problem, however, is that Bernat s claim is no longer true. Today, patients diagnosed as brain-dead can live not just for days or weeks but for many years. 50 What has changed? The change can best be understood by comparing brain death with high cervical quadriplegia, which can be caused by accidents involving transection of the spinal cord high in the neck (as in the case of the actor Christopher Reeve). 51 Both brain death and high cervical quadriplegia involve the physiological separation of the brain from the body (ignoring some details). 52 When the body no longer has the controlling and modulating influence of the brain, basic physiological parameters, such as heart rate and blood pressure, become wildly unstable. 53 This phenomenon is known as spinal shock, and in 1981 patients with either spinal shock or brain death would rarely survive their acute injury. 54 In recent decades, however, intensive-care units have become much more capable and sophisticated at controlling these physiological 47. Bernat et al., supra note 37, at See id. at (suggesting the use of permanent loss of functioning of the whole brain as the criterion for death of an organism because once total brain failure occurs, vital subsystems quickly fail). 49. Id. at D. Alan Shewmon, Chronic Brain Death : Meta-Analysis and Conceptual Consequences, 51 NEUROLOGY 1538, 1540 (1998) [hereinafter Shewmon, Chronic Brain Death ]. 51. Lois Romano, Riding Accident Paralyzes Actor Christopher Reeve, WASH. POST, June 1, 1995, at A1, available at archived at See DA Shewmon, Spinal Shock and Brain Death : Somatic Pathophysiological Equivalence and Implications for the Integrative-Unity Rationale, 37 SPINAL CORD 313, (1999) [hereinafter Shewmon, Spinal Shock and Brain Death ] (comparing the similarities in the body s response to acute spinal-cord injuries with brain death). 53. See Bernat et al., supra note 37, at (describing the rapid failure of vital systems once an organism permanently loses functioning of the whole brain). 54. Compare D. Alan Shewmon, Brainstem Death, Brain Death and Death: A Critical Re-Evaluation of the Purported Equivalence, 14 ISSUES L. & MED. 125, 141 (1998) (asserting that spinal shock and brain death share the same symptoms and essentially share the same treatment protocol), with Bernat et al., supra note 37, at 391 (writing in 1981 and declaring that the heart stops within a week in a brain-dead adult, even with aggressive medical support).

10 1894 Texas Law Review [Vol. 93:1885 functions. 55 Although patients with either of these conditions can initially be very unstable and tenuous, with adequate support in the ICU the body is often able to regain equilibrium, and the person may go on to live for many years. While it is not uncommon for patients with high cervical quadriplegia to live for years, 56 most patients diagnosed as brain-dead die within a short time of their injury either because they become organ donors, their families choose to withdraw life support, or physicians insist upon removal of life support because the patient meets the legal criteria for death. In most cases there is no conflict between the clinicians and family members around these decisions. No one diagnosed as brain-dead has ever recovered consciousness, even to the most minimal degree, 57 and generally family members have no more interest in maintaining life support under these conditions than clinicians have in providing it. 58 Nevertheless, on rare occasions families may refuse to have life support withdrawn. 59 In one well-documented case, a child who was diagnosed as brain-dead at the age of four lived at home on a ventilator for more than twenty years, fed through a feeding tube placed in his stomach. 60 An autopsy performed after he died showed that his brain had become an amorphous calcified mass there was no evidence of any brain cells at all. 61 Cases like this demonstrate clearly that the body does not need the brain in order to maintain the integrated functioning that is diagnostic of life. While our brains are indeed necessary for consciousness, personhood, and all of the things that make life worth living, they are not necessary for life itself or our continued existence. In this basic sense, we are not dissimilar from trees and other organisms that maintain complex integrated functioning in the absence of a brain. This paradox that a person considered legally dead could live for many years captured the American media for much of Jahi 55. See Shewmon, Chronic Brain Death, supra note 54, at 1543 (characterizing the effort required to sustain brain-dead patients as not particularly extraordinary for contemporary ICU standards ). 56. E Garshick et al., A Prospective Assessment of Mortality in Chronic Spinal Cord Injury, 43 SPINAL CORD 408, 410 tbl.1 (2005) (reporting the results of a study of mortality in patients with spinal-cord injuries showing that 324 of the 361 patients studied survived their injury). 57. See Jacque Wilson & Jen Christensen, Why Brain Dead Means Really Dead, CNN (Jan. 7, 2014), archived at 8JQX-BG4W (quoting a doctor s assertion that [n]o one who has met the criteria for brain death has ever survived ). 58. Robert D. Truog & Franklin G. Miller, The Meaning of Brain Death: A Different View, 174 JAMA INTERN. MED. 1215, 1216 (2014). 59. E.g., Wilson & Christensen, supra note Susan Repertinger et al., Long Survival Following Bacterial Meningitis-Associated Brain Destruction, 21 J. CHILD NEUROLOGY 591, (2006). 61. Id. at 592.

11 2015] Defining Death 1895 McMath was a fourteen-year-old girl at the time she had massive postoperative bleeding following a surgical procedure at Oakland Children s Hospital. 62 She was diagnosed as brain-dead in December 2013, and a death certificate was completed and filed. 63 The hospital informed her parents that she was legally dead and that they were going to remove her from the ventilator and send her to the county coroner. 64 The parents disagreed, insisting upon continued treatment. 65 The family was severely criticized by leading bioethicists, one stating: Their thinking must be disordered, from a medical point of view.... There is a word for this: crazy. 66 Others cited the now disproven view that the bodies of these patients disintegrate when the controlling influence of the brain is lost. [H]er body, according to one bioethicist, will start to break down and decay. 67 As it has turned out, none of this came to pass. Jahi McMath was eventually transferred to a rehabilitation center in New Jersey. 68 New Jersey allows families to opt out of the diagnosis of brain death; New York offers less protection, requiring only that such families receive reasonable accommodation. 69 Upon her arrival, the facility stated on their website that [t]his child has been defined as a deceased person, yet she has all of the functional attributes of a living person despite her brain injury. 70 According to accounts on the web, she continues to survive and has subsequently been transferred to a home-care facility where she continues 62. Lee Romney, Tests Show Jahi McMath has Brain Activity, Lawyer Says, L.A. TIMES, Oct. 2, 2014, story.html, archived at Id. 64. Truog & Miller, supra note 58, at 1215; Jason Wells, Jahi McMath s Mother Insists Brain-Dead Girl Is Not a Corpse, L.A. TIMES, Feb. 21, 2014, 21/local/la-me-ln-brain-dead-jahi-mcmath-mother-update , archived at 9J29-LUKK. 65. Truog & Miller, supra note 64, at Id. (alteration in original). 67. Liz Szabo, Ethicists Criticize Treatment of Brain-Dead Patients, NAT L CATHOLIC REP., Jan. 10, 2014, archived at Romney, supra note Robert S. Olick et al., Accommodating Religious and Moral Objections to Neurological Death, 20 J. CLINICAL ETHICS 183, (2009) (describing the protections provided by New York state law when a patient objects to a determination of death based on neurological criteria); Robert S. Olick, Brain Death, Religious Freedom, and Public Policy: New Jersey s Landmark Legislative Initiative, 1 KENNEDY INST. ETHICS J. 275, (1991) (discussing a New Jersey law providing for a religious exemption to marking the uniform standard of death at the point of neurological death). 70. Ben A. Rich, Structuring Conversations on the Fact and Fiction of Brain Death, AM. J. BIOETHICS, Aug. 2014, at 31, 32.

12 1896 Texas Law Review [Vol. 93:1885 to grow and develop, supported only with a ventilator and tube feedings. 71 According to reports from some neurologists, she has also gone through puberty and begun to menstruate. 72 In criticizing the efforts of her parents to keep her alive, one prominent bioethicist quipped: You can t really feed a corpse. 73 This is correct, of course, but given that McMath and other brain-dead patients can not only be fed, but can digest the food, excrete wastes, and grow and develop, he was unwittingly undermining his own position. 74 Another type of case that illustrates how brain-dead patients may retain integrated functioning involves the tragic stories of women who become brain-dead during pregnancy. Judging from reports in the media, these cases arise at least several times a year. 75 Typically, the family is given a choice of terminating life support or continuing to keep the woman alive until after the birth of the baby, 76 although in one unusual case a hospital required continued treatment of the woman against the objections of her husband because it believed that Texas law prohibited the withdrawal of life support from a pregnant woman. 77 Certainly the capacity of a woman to gestate a fetus for up to several months until delivery could be taken to be the sine qua non of integrated functioning. Consider, for example, a story broadcast on NBC News in February They reported that [a] 32-year-old Canadian woman who had been declared brain dead in December and kept on life support for six weeks died 71. Associated Press, Jahi McMath Remains on Ventilator in Home Environment One Year After Being Declared Brain Dead, N.Y. DAILY NEWS (Dec. 12, 2014, 10:25 AM), archived at Declaration of Calixto Machado, M.D., PhD, in Support of Plaintiff s Writ of Error at 6, In re McMath, No. RP (Cal. Super. Ct. Alameda Cnty. Dec. 30, 2013), available at archived at Declaration of D. Alan Shewmon, Professor Emeritus of Neurology & Pediatrics, David Geffen Sch. of Med. at UCLA, to Christopher B. Dolan (Oct. 3, 2014), available at 03.pdf, archived at Szabo, supra note MARGARET LOCK, TWICE DEAD: ORGAN TRANSPLANTS AND THE REINVENTION OF DEATH (2002). 75. See, e.g., Alan Lane et al., Maternal Brain Death: Medical, Ethical, and Legal Issues, 30 INTENSIVE CARE MED. 1484, 1485 (2004) (describing a case of maternal brain death during pregnancy); David J. Powner & Ira M. Bernstein, Extended Somatic Support for Pregnant Women After Brain Death, 31 CRITICAL CARE MED. 1241, 1241 (2003) (citing one organ-procurement program as discovering seven pregnant women among a group of brain-dead donors over a sixyear period). 76. Powner & Bernstein, supra note 75, at Jeffrey L. Ecker, Death in Pregnancy An American Tragedy, 370 NEW ENG. J. MED. 889, (2014).

13 2015] Defining Death 1897 on Sunday soon after giving birth to a baby boy. 78 Yet according to the traditionally correct understanding of brain death, the story should have reported that a 32-year-old Canadian woman who had been a dead corpse for six weeks gave birth on Sunday to a baby boy. I know of no instance where journalists have reported on these cases using the traditionally correct language, and I suspect they do not do so because language suggesting that dead people can give birth to babies would sound completely implausible, even ridiculous. And indeed, it sounds that way because it is. Critical-care clinicians often comment on the paradoxical observation that brain-dead patients are sometimes the healthiest appearing patients in the ICU. 79 Once they stabilize from spinal shock, they can have all the elements of normal functioning with the exception of consciousness and the ability to breathe and eat on their own. 80 They circulate, respire, digest food and excrete waste products, grow and develop, control their temperature, heal wounds, fight infections, and can even reproduce through the production of sperm and ova and the ability to gestate a fetus. 81 Two potential objections to this argument are worth considering at this point. First, many observers of the Jahi McMath case believe it is irrelevant whether she is alive or dead. 82 One might ask, for example, Even if a person is alive in some technical sense, why would anyone who was irreversibly unconscious and who will never have the ability to interact with the world in any meaningful way want to live like that? This is a good question, and can be addressed in two ways. First, we must not confuse the question of whether someone is dead with the question of whether a life is worth living. Although these two questions may collapse together for many people in cases like these, they are fundamentally distinct. The first is a question of biological reality, the second is a question of values. A second and very different response to this question has been advanced by a number of philosophers, most notably Bob Veatch at Georgetown University. He has argued that patients who are irreversibly unconscious should be considered dead, since they have lost the intrinsic features of personhood. 83 This argument defines death in moral terms 78. Julie Gordon, Brain-Dead Canadian Woman Dies After Baby Boy Born, REUTERS, Feb. 11, 2014, available at , archived at LOCK, supra note 74, at Id. 81. D. Alan Shewmon, The Brain and Somatic Integration: Insights into the Standard Biological Rationale for Equating Brain Death with Death, 26 J. MED. & PHIL. 457, (2001). 82. See, e.g., LOCK, supra note 74, at 244 (noting that families might prefer to focus on dealing with loss rather than engage in philosophical debates over the definition of death). 83. Robert M. Veatch, The Whole-Brain-Oriented Concept of Death: An Outmoded Philosoph-ical Formulation, 3 J. THANATOLOGY 13, 15 (1975).

14 1898 Texas Law Review [Vol. 93:1885 rather than ontological language, and while I cannot do justice to it here, it is compelling and philosophically sound. This position is known as the higher brain criterion, and it differs from the whole brain criterion as represented by the UDDA in that it focuses on destruction of only the higher brain structures that support consciousness and excludes the brainstem structures that support vegetative functions like breathing. 84 Although the higher brain criterion position is philosophically sound, it suffers from many practical and public-policy concerns. First, at a practical level, the precise neurological substrates for consciousness are not known, and there is a great deal of controversy in the field about whether and how the absence of consciousness can be correctly diagnosed. 85 Second, at a public-policy level, there is no consensus in our country that the absence of consciousness can be equated with the death of the person. Although most observers agreed that Terri Schiavo was irreversibly unconscious (and her autopsy proved that this was certainly the case), 86 public figures at the highest levels of government insisted that it was not acceptable to allow her to die, let alone consider her to be already dead. 87 The second objection to the argument that I will consider is the view that even though patients like Jahi McMath may be biologically alive, they are ventilator dependent, and this artificial form of life support is merely masking their death. One of the criteria for the diagnosis of brain death is apnea, that is, the complete absence of any respiratory drive to breathe. 88 As such, when the ventilator is withdrawn these patients make no respiratory effort and suffer cardiac arrest and death within minutes. 89 But does it make sense to say that people who are completely dependent upon a form of life support be considered dead simply because they would be dead if that life support were removed? Consider patients who require dialysis or a cardiac pacemaker to sustain life. Absent continued use of this life support, they will die. Certainly, we cannot say that they are already dead. Consider also that patients with high cervical quadriplegia like 84. Robert M. Veatch, The Impending Collapse of the Whole-Brain Definition of Death, HASTINGS CENTER REP., JULY AUG. 1993, at 18, (1993). 85. Martin M. Monti et al., Willful Modulation of Brain Activity in Disorders of Consciousness, 362 NEW ENG. J. MED. 579, 580, 588 (2010) (observing that the rate of misdiagnosis of consciousness disorders is approximately 40% and advocating the use of functional magnetic resonance imaging to improve accuracy); Adrian M. Owen et al., Detecting Awareness in the Vegetative State, 313 SCIENCE 1402, 1402 (2006) (recommending the use of functional neuroimaging to detect conscious awareness in patients who are assumed to be vegetative yet retain cognitive abilities that have evaded detection using standard clinical methods ). 86. Fred Charatan, Autopsy Supports Claim that Schiavo Was in a Persistent Vegetative State, 330 BMJ 1467, 1467 (2005). 87. George J. Annas, Culture of Life Politics at the Bedside The Case of Terri Schiavo, 352 NEW ENG. J. MED. 1710, 1710 (2005). 88. Wijdicks, supra note 24, at Bernat et al., supra note 37, at 392.

15 2015] Defining Death 1899 Christopher Reeve may live for many years despite the fact that they are completely dependent upon mechanical ventilation, in exactly the same way as patients diagnosed with brain death. 90 Again, it is clear that dependence upon life support cannot be a reason for considering a person to be dead. The question is whether the necessary physiological functions such as respiration, circulation, and hormonal regulation are being performed, not how they are being performed. 91 These concerns about brain death have been discussed in hundreds of books and articles in academic journals, newspapers, and magazines for decades. But the issues were taken to a new level in 2008 when the President s Council on Bioethics took up the question of brain death in its white paper Controversies in the Determination of Death. 92 The Council, formed under the Bush administration, included eighteen eminent scholars from multiple disciplines, including a neurosurgeon. 93 The chairman of the Council at the time was Dr. Edmund Pellegrino, one of the founding leaders of the field of bioethics. 94 Their analysis essentially followed the argument I have outlined above, concluding that [i]f being alive as a biological organism requires being a whole that is more than the mere sum of its parts, then it would be difficult to deny that the body of a patient with [brain death] can still be alive, at least in some cases. 95 They went on to state that [t]he reason that these somatically integrative activities continue... is that the brain is not the integrator of the body s many and varied functions.... [N]o single structure in the body plays the role of an indispensable integrator. Integration, rather, is an emergent property of the whole organism This conclusion from the Council was remarkable in that it completely undermined a foundational assumption of organ donation and transplantation: namely, that brain-dead organ donors are dead and that procuring their organs adheres with the DDR. As one might imagine, however, allowing such a radical conclusion to stand could have had a devastating impact upon the entire field of organ transplantation and potentially cost the 90. Shewmon, Spinal Shock and Brain Death, supra note 52, at 317 (observing that high cervical quadriplegia has a biphasic survival curve, with rapid drop-off in the first three months followed by a relatively low death rate in the subsequent chronic phase). 91. See Franklin G. Miller & Robert D. Truog, Rethinking the Ethics of Vital Organ Donations, HASTINGS CENTER REP., Nov. Dec. 2008, at 38, 40 (arguing that withdrawing ventilation or life support causes a patient s death ). But see Bernat et al., supra note 37, at 394 (asserting that irreversible cessation of spontaneous ventilation and circulation [is] the usual method for determining death (emphasis added)). 92. PRESIDENT S COUNCIL ON BIOETHICS, CONTROVERSIES IN THE DETERMINATION OF DEATH, at xix (2008) [hereinafter CONTROVERSIES IN THE DETERMINATION OF DEATH]. 93. Id. at xi xiii. 94. Id. at xi. 95. Id. at Id. at 40 (emphasis omitted).

16 1900 Texas Law Review [Vol. 93:1885 lives of many patients who would die prematurely for lack of a transplantable organ. So while acknowledging that all of the prior scholarship in support of the concept of brain death was flawed, the Council proposed an entirely new argument for why brain death represents the death of the human organism, replacing the term brain death with the new concept of total brain failure. 97 To be alive, according to the Council, organisms must be able to perform the vital work of the organism as a whole and in particular must satisfy three criteria: [R]eceptivity to stimuli and signals from the surrounding environment. 2. The ability to act upon the world to obtain selectively what it needs. 3. The basic felt need that drives the organism to act as it must, to obtain what it needs The report has received surprisingly little response or commentary, but my colleagues and I have a difficult time even understanding what these three criteria mean. 99 If by vital work the Council meant the functions associated with consciousness, then the Council s definition would classify patients in a persistent vegetative state as dead, a position the Council specifically rejected. 100 If by vital work the Council meant functions other than those associated with consciousness, then patients diagnosed as brain dead may retain the entire range of these functions, as discussed earlier. In short, I am skeptical about the Council s new formulation, and it remains to be seen whether this will be adopted as a convincing new justification for the concept of brain death. To briefly summarize the argument to this point, the concept of brain death describes a patient who may still be alive but who is severely neurologically injured and will never regain consciousness or breathe without a ventilator. As such, our practice of procuring organs from these patients routinely violates the DDR. B. DCD Donors Figure 1 shows the two pathways to organ donation. The discussion above has covered the pathway on the left, the brain death pathway, and I 97. Id. at Id. at See Franklin G. Miller & Robert D. Truog, The Incoherence of Determining Death by Neurological Criteria: A Commentary on Controversies in the Determination of Death, A White Paper by the President s Council on Bioethics, 19 KENNEDY INST. ETHICS J. 185, (2009) (criticizing the Council s explication of the vital work criteria) CONTROVERSIES IN THE DETERMINATION OF DEATH, supra note 92, at

17 2015] Defining Death 1901 will now turn to the pathway on the right, the DCD pathway. 101 DCD donation is typically performed with patients who have suffered severe neurological injury, but injury less severe than that required for the diagnosis of brain death. 102 In order to satisfy the DDR, these patients have life support typically the ventilator withdrawn in a controlled fashion. 103 Depending on hospital protocol, this may be done in the ICU, or the patient may be transported to the operating room for the procedure. 104 In either case, once life support is withdrawn the patient is carefully observed for cardiac arrest and the loss of circulation, as determined with echocardiography by the absence of cardiac ejection or with an arterial catheter by the absence of pulsatility. 105 Generally this must occur within the first sixty minutes after the withdrawal of life support, since if the dying process is prolonged beyond this window it is presumed that the organs have suffered too much ischemic injury to be transplantable. 106 If, however, the patient does become pulseless within this window, then the patient enters the so-called hands off or death watch portion of the process, where the patient is observed for an interval of between two and ten minutes (depending upon the hospital protocol) to determine whether the heart will start again on its own (autoresuscitation). 107 At the end of that interval, if the patient remains pulseless, the patient is declared dead and surgical organ procurement begins. 108 As discussed above, the moment of death occurs at the time when the energy-consuming processes of the body diminish to a point of no return, where the entropic forces pushing towards disorganization and disintegration can no longer be overcome. Medical experts agree that many patients have not reached this point of no return after only two to five minutes of pulselessness, since patients who are not organ donors can be successfully resuscitated after being pulseless for this length of time. 109 While acknowledging this point, Professor Bernat has proposed that in the 101. See generally NON-HEART-BEATING ORGAN TRANSPLANTATION, supra note 21; James L. Bernat et al., Report of a National Conference on Donation After Cardiac Death, 6 AM. J. TRANSPLANTATION 281 (2006) James L. Bernat, Are Organ Donors After Cardiac Death Really Dead?, 17 J. CLINICAL ETHICS 122, 123 (2006) NON-HEART-BEATING ORGAN TRANSPLANTATION, supra note 21, at Id. at James L. Bernat et al., The Circulatory Respiratory Determination of Death in Organ Donation, 38 CRITICAL CARE MED. 963, 966 (2010) See Reddy et al., supra note 19, at 1226 (describing the standard policy of a one-hour maximum between withdrawal of life support and cardiac arrest for liver transplants) Id. at See Bernat et al., supra note 101, at 282 ( When death is declared... no further time is required before recovery events may be initiated. ) See, e.g., Johnson, supra note 46 (noting that some patients can be successfully resuscitated after as long as fifteen minutes of pulselessness).